Monday, January 30, 2012

The most important thing I can say to someone who has just received a diagnosis — any diagnosis, for them, their child, whoever — is to find and connect with people going through the same thing. The Internet Age is a wondrous thing — even people with extraordinarily rare circumstances can find each other, console each other and laugh together.

No one knows this better than me — who, with nothing more than a laptop and a dream, has cobbled together a small group of parents of multiples with cerebral palsy. I originally tried to get them together on my too-cleverly titled FOR(m)UM (get it? A forum? For mum?) but that didn't work as well as I'd hoped. Plenty of people introduced themselves but the notification system was poor and even I had no idea when someone had asked a question or posed a problem.

So, I did what everybody seems to be doing these days: I moved it to Facebook! Oh, so much better. I'm a bit of a Facebook nut, so this is working much better. I love the dialogues about stroller options for so many little ones who can't walk and the support we offer each other after a particularly hard day.

If you are a parent of a multiple (or two or three...) with cerebral palsy, please request to join us at: https://www.facebook.com/groups/174459189319732/ (This group is closed so we can talk amongst ourselves; another benefit over the old public FOR(m)UM.)

Another passion of mine is the Anat Baniel Method, Malachi's primary form of therapy. I started a Facebook group for parents of children who are getting ABM lessons so we could share our success stories, our tips and our real-world applications of the method, which differs greatly from traditional physical therapy. This group has really taken off and I'm so pleased. This group is open, so if you're just curious, you can read our discussions there. Otherwise, if you want to join, by all means request it: https://www.facebook.com/groups/172740526149963/

NOTE: I have no idea what happened to the final version of this post. It was up for a minute or two and then it was gone. I've updated this earlier draft that showed up in its stead over the last couple hours to be how it was originally intended, so if you've come back and it's different, that's why.

Tuesday, January 24, 2012

Malachi on his new scooter, which helps him "crawl" around,
while Jaden helps retrieve their "toys" from inside a kitchen cabinet.

I've thought for a while now about how it would probably be a lot easier to accept Malachi's disability if it were something genetic, like Down syndrome.

Don't get me wrong, I don't think it would be easy, just a little easier.

Because at that point, it would just be who he is. It would be part of the whole package, down to his very DNA.

But with a brain injury, something happened to Malachi, something that took something from him. Along with that are all these feelings of loss and guilt and grief that I'm not sure I'll ever fully escape.

I've sort of alluded to this idea before that injured special needs kids aren't the same as genetic special needs kids, and I've thought of writing a more in-depth post about it for a while, but I always came back to "what's the point?" Why do I want to point out this potential rift in the special needs community? Do I really want to get into some sort of horrific "who has suffered more" debate?

No, I don't.

So why am I bringing this up now?

Well, because almost two months ago we took Malachi to a new developmental pediatrician. Our regular hospital hadn't sent over Malachi's records, so all she had to go on was what I told her and what she saw. With that disclaimer, she mentioned casually — as if this wouldn't explode my head — that she wondered if Malachi's prematurity wasn't the cause of his poor motor control. She said his expression of cerebral palsy is unusual for someone with his type of brain injury (Grade III PVL) and that it might be a genetic or metabolic disorder instead but that no one looked for it because of the results of the ultrasound.

Say WHAAAAAAAAT?

I quickly dismissed this idea. It's nuts. And besides, wouldn't Jaden, who has identical DNA, have it, too? Clearly she just didn't have all the facts.

Right?

But she had planted a seed and at the edge of my consciousness questions sprouted up.

She had asked if he was unable to do things he had previously been able to do. No, I had responded, it's been a steady (albeit exceedingly slow) progression.

Why does it seem like he can't build on his skills like Jaden can? Is it just the type and severity of CP that he has or...

...is something else going on? (Dun, dun dun.)

What if!, my mind exclaims. What if it's like those twins who were misdiagnosed with cerebral palsy but actually had a metabolic disorder? What if that's Malachi? What if he just has to take a pill and he'll be all better?

I think about this scenario in exactly the same way I think about what I would do if I won the Powerball tomorrow. Yippeeeeee! So long, suckers!

Yes, I've grown a lot since Malachi's diagnosis. Yes, I know some of you out there have cerebral palsy yourself and wouldn't change it and don't want me to diminish your existence.

I get it. I really do.

But, c'mon, man! What if? What if I could leave this Land of Not OK? What if I could go back to only being a visitor? How sweet that would be! What if it's not cerebral palsy?!

Then another voice calls from the depths of a very dark place.

What iffffff, this voice slithers. What if it's not cerebral palsy? What if it's like that other boy you know? The one who was misdiagnosed with cerebral palsy, but at age 7 his parents found out he actually has a rare genetic disorder?

A genetic disorder that will result in his slow degeneration and death by his mid-20s.

Friday, January 20, 2012

I finally found a box full of my old children's books in my in-law's garage a few weeks ago. One of them was "Ten in a Bed." My husband and I started reading and singing the song and around "there were eight in a bed" we realized that Malachi was really upset. We had never sung together, so he tried singing alone. Nope. Then I tried. Nope.

Eventually we just had to read the book in a monotone to get through it.

The next morning at breakfast, I quietly sang "roll over, roll over," to see how Malachi would react. At first I thought he wouldn't do anything, but sure enough after a second of silence he looked at me with those big doughy eyes and stuck out his bottom lip.

I vowed I wouldn't sing it again, but I just had to catch his reaction on video. Too funny!

I can't imagine why he hates this song. This might be over-analyzing it, but part of me wonders if it's because of the words "roll over" and the fact that he can't, despite our daily encouragements....

In any event, he seriously hates it, so we'll have to stop singing it around him. (Even when I played back this video around him he got sad again.)

Now, if we can only keep that darned song from getting stuck in our heads!

Sunday, January 15, 2012

You're probably a lot like me. You consider yourself pretty smart, fairly thoughtful and accepting of all people.

I did, too.

That is, until I had a son with a brain injury. Suddenly, when it was MY SON that the word "retard" could refer to, its casual derogatory use was no longer acceptable. When it was MY SON that could be denied access to a mainstream education, when it was MY SON who might be scorned by his peers, when it was MY SON who might never find a fulfilling relationship, these things seemed intolerably unfair and absurdly narrow-minded.

You see, what I fear most about my son's disability isn't how he might need a wheelchair to get around. It isn't that he'll need adaptive devices to perform daily tasks you and I don't even think about. It isn't even that he'll need countless medical interventions, including but not limited to surgery.

It's you. It's the pre-Malachi me. It's everybody else who might look at him like a second-class citizen. It's the people who will stare at him. It's the people who will ignore him. It's the people who will ostracize him.

Today I found out that list of people includes highly educated doctors and medical professionals who presumably interact with disabled patients all the time.

If you read the above link, you will learn that a doctor at the Children's Hospital of Philadelphia recommended against a kidney transplant SOLELY because of this girl's mental retardation. If he gets his way, she will die.

As if we parents of disabled children didn't have enough to worry about.

So what can YOU do? How can you help make the world a more tolerant and accepting place for my son and others with disabilities?

Well, that's the good news. You're doing it right now. Reading this blog or others, familiarizing yourself with the lives of people with disabilities, getting to know them as people instead of statistics or theoretical quasi-people will make it harder for you to stomach stories like the one above.

Whether it's race, creed, culture or any other thing that divides us, the most powerful weapon is knowledge: knowledge of the complexity of each individual on this planet, an understanding of his or her basic humanity and the acceptance that ALL people are owed love, respect and a place in society.

P.S. If you need a little pick-me-up after reading the link above, I highly recommend this video. The little girl is so cute and the message is powerful and beautifully rendered.

Thursday, January 05, 2012

I had kept them up until a little past 8 p.m. to avoid the 30 minutes of loud babbling we'd been treated to the past few nights at bedtime.

So why the hell aren't you sleeping, Malachi?

I didn't want to cave in like we have the last few nights and let him watch TV, so I let him cry for a while.

Keep calm, Shasta. Matt's at work so you're all alone tonight.

Still crying.

I hate this kid, I hate this kid.

I pick him up and rock him and sing to him.

Keep it together, Shasta.

He cries even louder and thrashes around on me instead of the bed.

Don't get angry. He'll only get scared and cry harder if you get angry.

He must have an upset tummy. He had a lot of gas at dinnertime but never did poop.

Dammit. I'm going to have to shove a suppository up his butt, aren't I?

Cry.

Yup.

Cry. Burp. Cry. Strain. Cry. Poop.

Ahh.

As his breathing calms, we dance together in the moonlight in the living room. He lays on my chest and looks up at me with tired unblinking eyes. We breathe each other's air for a long peaceful moment.

Then, he says, with a recognition I feared I would never see in his eyes: "Ama."

Sunday, January 01, 2012

I remember as a kid I could never understand what the big fuss about New Year's resolutions was. It seemed a little silly to wait until Jan. 1 to make some big proclamation. If you want to change something about yourself, change it.

The older I get, the more I see the need for resolutions. And the more I learn about the brain, the more I understand why.

The brain organizes itself like a tree: the trunk and thick branches are the main pathways that branch into finer and finer distinctions the older one gets. So if you've been building on one habit for many years, it takes some serious pruning and reorganizing to get a different habit to grow it its place.

This brings me to my New Year's resolution: talk in a funny accent. Yes, really.

You see, for some reason people have a lot of trouble understanding me when I talk. I don't have a speech impediment or anything like that, I just mumble a lot. There are times when I can speak very clearly, such as when I use my "Trust me, I'm a reporter" voice. But that sounds much too professional to use at home.

My husband in particular really can't hear what I'm saying a lot of the time. We even had his hearing checked out, but it came back with excellent results, so it has to be me. (Though, I, of course, feel there are many times when he doesn't hear me because he is not listening.)

It would seem like the simple solution would be to raise my voice. But I feel like if I raise my voice, a bitchy and demanding —or at least angry — edge creeps in, especially if I'm making a request. So often I keep my voice quiet.

This drives my husband nuts as he often guesses at what I want or has to ask me to repeat what I've said. By the third time, I really am angry, so my loud voice sounds bitchy automatically. Thus the cycle repeats itself.

I realized in working with Malachi that it must have something to do with the muscle tone of my mouth and the fine motor control I have there. Maybe, I thought, (and it's possible I was drunk at the time) maybe if I talk in funny accents for several days, I can break up the tone in my mouth and introduce variation to the way I enunciate, eventually making my voice clearer.

This is one of the foundational principles of Malachi's primary therapy, the Anat Baniel Method: break up tone by introducing the brain to variation and encouraging new patterns to form.

Perhaps if I can keep this resolution, I will one day be easier to understand.

Books by Shasta Kearns Moore!

Prayers, thoughts, well-wishes, intentions, good vibes, whatever

Here are a few key things on our cosmic wishlist for Malachi's recovery. I don't care who you address your requests to, but I do believe you can help us right now by taking a moment to ask your divinity for these things:

» The patience and stamina to explore his body and what it can do.

» The ability to swallow food and liquids normally.

» Stability through his trunk, including strengthening the flexor muscles.